As we settled into bed on Wednesday night, I pulled out my trusty pink notebook that has been my constant companion since last March. "Okay, time to put our list together", I said to Mike. Thursday morning I had an appointment with my oncologist and per our usual ritual in the Malley house, we generated our list of questions and concerns for Dr. F the night before.
"Make sure to tell Dr. F that my last surgery was May 4th...tell him I just saw Dr. M on Monday and he gave me the green light to exercise my arms...I am back to work and it's going well...still bruising a lot, so how does blood work look?" And before Mike drifted off to sleep, he reminded me for about the 100th time, "please make sure to talk to Dr. F about your back." Ah yes, my back. The one thing that has been a trouble maker from the start. This is the area we have worried about from Day #1 when a questionable little spot appeared on those first diagnostic tests. I was heading into this appointment on my own this time so Mike made me promise that I would be honest with Dr. F about my increased back pain and the symptoms I have been having lately. So, I shared with Dr. F that I feel about 80 years old when I wake up in the morning. That my entire back feels achy and so incredibly stiff. I told him that I experience a dull achy pain throughout my thoracic and lumbar spine at the end of most days. And, I shared with him the terrifying and excruciating pain I experienced on Tuesday when I had severe muscle spasms throughout my paraspinal muscles while sitting at my desk at work. I haven't experienced spasms like that since last fall and it is just about the most painful thing I have ever felt. BUT, I also explained to Dr. F that I have been doing a lot more lately. I have been at the gym more, I have been busy with lots of photo sessions that require me to get in all sorts of goofy positions while photographing children. I told him that I have also been spending hours and hours on end at my desk editing my photographs and learning how to run a business. I told Dr. F that although my family has often suggested I get an MRI done, I don't have any interest in having my scans completed any earlier than originally scheduled. I explained that I have been looking forward to feeling "normal" and enjoying this summer without worrying about test results. Unfortunately, Dr. F really didn't see eye to eye with me on my whole "ignorance is bliss" theory. He decided to move my scans up so we can see what's going on. Logically, I am thankful that he is so attentive and proactive, but right now I am just feeling sad, scared, and anxious. Just when life was starting to feel more normal again, now I have to worry about this. It is so difficult to live this way - to feel all sorts of aches and pains and always have to wonder, is the disease causing this pain? Has my medication stopped working? Does this mean the cancer is spreading? It leads you down a dark and awful path to "Worryville." There is not a doubt in my mind that the psychological and emotional aspects of living with cancer far outweigh the physical ones. The roller coaster of emotions is just relentless and the hardest part is knowing that I will never be able to get off this awful ride. The timing seems like it couldn't be worse. My closest friend with metastatic BC just found out a few days ago that she has had a serious progression of her disease, after being stable with no evidence of disease for the past year. She has been scanned every three months and it's absolutely terrifying to me to think that so much can change in such a short period of time. It has been so hard to think of what she is going through and watch her grieve this news, and experience all of those emotions that we both felt when we were first diagnosed...fear, worry, doubt, doom, disbelief. I can't help but put myself in her shoes and wonder if I will have a similar fate. Will we have to start a new treatment plan? Will I have to have chemo again? Will my quality of life be as good if I am on a new medication with different side effects. I try so hard not to worry, but it is nearly impossible to not have these thoughts race through your mind. I wasn't prepared for this. I thought I would have until the end of August to have my "scanxiety" kick in and all of a sudden, it's upon me. I couldn't stop crying last night and feeling overwhelmed and scared. Today, I am still feeling a little down but I am trying to be very hopeful and optimistic that everything is fine, but all the "what if's" are terrifying nonetheless. I am begging for your prayers. Prayers that my spine is just as healthy (if not healthier!) than it was when I was scanned in February. Prayers that my current medication is still working and I can maintain my good quality of life. Prayers that the aches and pains subside in my back and that it is simply a result of increased activity. And especially, prayers to help me remember that every day is a blessing - that I am able to remain grateful - and that I am not consumed by fear and doubt. Thank you so much! I will be having my full body bone scan and spine MRI on July 2, followed by a chest/abdomen/pelvis CT on July 6. I will have to wait until July 12 to see Dr. F for my results since he is only at my clinic on Thursday's. I will definitely keep you all posted. xoxo, Meghan ps - please keep my stepdad, Doug and his siblings in your prayers as well. Doug lost his sweet and thoughtful dad last night, after leading a wonderful life for 95 years. I know this will be an extra difficult Father's Day for them this year. Thank you for being a great father figure, Doug. Happy Father's Day to you! And Happy Father's Day to my wonderful father in-law, Mike. We are so grateful you are feeling better. Love you!
24 Comments
Could you hear the sound of my huge exhale this morning?! I think I let out the biggest, loudest sigh of relief I have ever experienced in my life. The scan results were great - thank you God! I am so grateful, so relieved, so over the moon with hope and optimism.
Leading up to this day, I had been feeling an odd sense of calm about these results. Of course there was a part of me that was nervous, but it was different this time. I felt such a sense of peace and faith that no matter what Dr. F told us, it would be okay. If the results weren't what we hoped, we would figure out a new path and continue to travel down it with just as much determination as we have up to this point. But then my back started hurting a little bit - and the nerves started to set in a little. My back had been feeling great but it started to feel a little more achy and stiff the past few days and I started thinking, "oh my God, is this a sign that it has spread throughout my bones?" Mike reminded me that we spent many hours sitting in uncomfortable conference chairs in New Orleans and then walked 5 or 6 miles a day as we explored the Big Easy. But, I couldn't help but worry that it was a bad omen. Even still, I felt good this morning - I felt calm and pretty relaxed heading into my appointment. That was until Dr. F walked into the room. Last time, he walked right in and said, "your scans look good". Boom - good news right off the bat - then I could breathe. Well, this time he walked in looking more serious than normal. Immediately, I looked over at Mike and felt worried. He proceeded to ask me about my symptoms and how I was feeling...why is he asking me this first? Does that mean things are worse? What isn't he saying? He then asked about New Orleans and we chatted about the conference, he did a full physical exam and it wasn't until about 8 hours later (or so it seemed) that he finally sat down on his stool and said, "the scans look good". AHHHHH.....I can breathe! And then the floodgates opened. I couldn't help but cry - for the first time ever, I cried in front of one of my doctors. Tears of joy, tears of relief, tears of gratitude. Overall, the scans showed no new evidence of disease. The medications I am taking are continuing to keep the cancer under control and prevent the further spread of the disease. The spots that have been visible on my spine continue to show evidence of healing. I can continue to stay the course and keep doing what I am doing. THANK YOU GOD! Thank you to all of you for your continued prayers, cards, emails, texts, etc. I truly believe in the power of prayer and I feel so blessed to have hundreds of people around the country (and some even around the world), praying for me and my family and sending us positive thoughts and well wishes. I can never say enough how much it means to us. I am not only celebrating this news with Mike and my mom, Doug and Jeff - but with my extended family, my friends, and each and every one of you that has followed my journey and kept me in your thoughts and prayers. Thank you so much! Life is good - have a wonderful day and take some time to be grateful for all the blessings in your life! xoxo, Meg ps - I haven't had time to go through all my pics from the conference and New Orleans yet. I took over 500 of them! But here are a few quick shots from my iphone :) We had a wonderful time in New Orleans and I can't wait to tell you more about it soon! Let the "scanxiety" begin....ugh, it's that dreaded time of year when I get all my scans redone. I try very hard to remain calm, optimistic and hopeful - but let me tell you, it's pretty tough. I have come to realize that this scanxiety is something that will never go away. It doesn't matter how many times I have a good scan - the worry, doubt and fear all come creeping back in when it's time to be scanned again. Although I like to focus on how wonderful it will feel to get news that I am still in remission, that I can stay on my current treatment regimen, and that everything I have been through is paying off - I can't help but be terrified of the alternative. That the cancer is active again, that it's spread, that my medicines are no longer effective, that it's infiltrated my liver or brain. My wonderful friend Meredith has taught me to try to think of the worst possible scenario and how I would handle that, and what would our plan be. That way, it takes away some of the fear of the unknown and you can try to help prepare yourself in some way should that be the news you receive. I have been spending some time thinking about this lately and trying to think about how my life could once again change in an instant when Dr. F delivers my scan results. Would I have to start chemo again? Would I need more radiation? Do I need to start new medications? What would the side effects of those be? Do I need to look into clinical trials? Last night as Mike and I laid in bed, I asked him that very question -"What would we do if the results show it has spread?" His response is just another example of why I am so blessed to have him love me. Without hesitation, he simply stated, "We would do anything we had to do to get you better." Over the course of these past 11 months, I have been slowly adjusting to living a life with cancer. I have come to understand that I will deal with this disease and its effects in one way or another for the rest of my life. Fine - no problem - I can do that. I just want to remain stable. I pray that the disease is still stable, and that I can continue living my life as I am right now. Aside from a few minor things, I have very little side effects with my current treatment plan. I feel good about 90% of the time. I am enjoying being back at the gym and back to yoga classes. I look forward to returning to my job after my next surgery. I am able to travel and spend time with family and friends without worrying too much about how my body will hold up. So, I can't help but worry about these upcoming results changing all of this for me. I used to say, "okay, I have cancer but hopefully I won't lose my hair", and then it went to "okay, I have to lose my hair but maybe I won't have to lose my breasts." Then it once again changed to, "well, I have to lose my breasts but please just let me still be able to have children." Sadly that statement was forced to transform once again into, "well, I can't have children but please just let me be stable and lead a long life with Mike." And of course "stability" is what I truly want - if I can't be cured (although I do still believe in miracles!), then I pray for stability - for a long, long time. But it all truly boils down to one thing - I can (and have) given up so, so much - and I would gladly do it again in a heartbeat if I knew it would allow me to lead a long and happy life with the people I love. But you see, no one can make such promises. None of us know what our future holds and how much time we have. The difference is that I never used to worry about dying before - I took it for granted that not everyone is afforded a long and healthy life like I assumed I would have. So, I have to make the conscious decision to try to release the worry and fear and give it up to God because I am not the one in control. All I can do is continue to live each day to the fullest and be grateful for each day. With that said, I would sincerely appreciate as many prayers, healing thoughts, and uplifting words as you can possibly share right now. These times are very tough- not only myself, but for Mike, Mom, Doug and Jeff as we all anxiously await the results. Please pray that this disease is still in remission, that my spine is healing, that my organs are free and clear of disease, and that our anxiety and worry doesn't consume us while we wait for the results. My tests are scheduled for this Tuesday and Wednesday and we won't receive the results until the following Thursday, which is March 1st. You have no idea how much your prayers, thoughts, and comments help lift us up and keep our spirits high during these times! Thankfully, Mike and I will have a great distraction from my scan results. We leave for New Orleans on Thursday morning! We are actually going to attend a breast cancer conference but we will have plenty of extra time to just enjoy the city on our own. We are such great travel partners and always have the best time when we are exploring somewhere new with each other. Exactly one year ago was the last trip we took by ourselves when we visited Seattle just a few weeks before I was diagnosed. Check out some images from our trip here. We had the best time and I am sure New Orleans will be no different! Friday evening through Sunday morning we will be attending the Annual Conference for Young Women Affected by Breast Cancer. Young women under the age of forty come from all over the world to attend this conference. There are excellent guests speakers, many of which are leading researchers in the field of breast cancer. There are numerous break out sessions dealing with everything from integrative medicine, an update on the latest metastatic research, and even sessions solely for male caregivers. We are both looking forward to learning a lot and I also hope to meet other young women with metastatic disease such as myself. Of course, we will find plenty of time for some beignets at Cafe du Monde, grabbing a great cajun meal, and checking out the sites of the French Quarter. We are really looking forward to it. Thanks in advance for all of your thoughts and prayers for my upcoming tests - I will be sure to update the blog next week once I get the results!
xoxo, Meghan We finally received the good news we were praying for! Thank you, Lord!!! And thank you to all of you, our amazing family and friends for your non-stop prayers and well wishes - it definitely paid off! I am totally wiped out from an extremely long and exhausting day, so hopefully I include all of the important details. We had long appointments with both Dr. F and Dr. B today which meant we were at doctors offices from 9:45am until 3pm with a one hour break for lunch in the car while driving. It's all worth it though, for such great news! We met with Dr. F first and he informed us right away that the test results looked great! He said that the CT, MRI, and bone scan showed the following... --breast tumors demonstrate significant shrinking --axillary lymph nodes demonstrate shrinking --there is evidence of healing in the bone throughout my spine --no new evidence of disease! BOOYAH! (okay, not exactly Dr. F's words) Overall, this was the best possible news we could have received and we couldn't be more relieved and thankful! I am so grateful that these past five months of chemo haven't been for nothing, and that the cancer is actually responding well. Dr. F was very pleased and said that we are definitely headed in the right direction. He said that the imaging studies will always show abnormalities throughout my thoracic spine where there has been cancer, but now there appears to be evidence of healing. He even said that I may not have to have radiation to my spine, which would be wonderful! The rest of my appointment with him consisted of formulating our plan of where we go from here. So, here's the latest... --start hormone therapy (Tamoxifen) - a daily oral medication which will interfere with the activity of estrogen, which is what is feeding my cancer --start Zoladex - a monthly injection to suppress my ovary function. This will shut down my ovaries and stop them from making estrogen so that the tumors cannot get the estrogen they need to grow. This also means MENOPAUSE! Just another "perk" of having the big C. ;) Who would have thought I would start menopause at the age of 29?! --after surgery, start Denosumab - a monthly injection to strengthen my bones and try to protect them from further damage due to metastasis So, today I started the Tamoxifen and received my first injection of Zoladex - a humungous needle which is injected into my abdomen = fun times! I will have a follow up appointment with Dr. F in 6 weeks and will be re-scanned every 6 months at the absolute latest - it could be earlier than that if I am having any new symptoms or concerns. After a collective high five between Mike, Mom and I, we nearly skipped out of Karmanos and headed over to Beaumont to meet with Dr. B. After a physical exam and review of my imaging results, Dr. B also informed us that she was very pleased with my progress. She said that she didn't expect my cancer to respond so well to the chemo since it normally responds best to the hormone therapy. We met with Dr. B for at least an hour, discussing all the details of the surgery, what I can expect, and what recovery will be like. Dr. B's wonderful nurse, Linda then used this great new device to take some measurements of my arms in order to compare them to post-op measurements to track any possible lymphedema. Lastly, we finally set our date for surgery. Friday, October 14 is the big day for the bilateral mastectomy. I am definitely nervous about it but happy to finally have a plan and know when it will be. This will give me some time to get my energy level and blood counts back up since they are still pretty low due to chemo. So, that's the latest and greatest news! More upcoming appointments on the horizon are... --meeting with Dr. M my plastic surgeon on October 3 for final preparations before surgery and the start of the reconstruction process --meet with another new team member, Dr. R who is a physical medicine and rehabilitation doc at Beaumont to take more pre-op measurements and assessments. He will also be the one to let me know what my restrictions after surgery are and when I can start physical therapy in order to get my range of motion back in my arms....good thing I have some connections to some awesome PT's :) --meet with another new team member, Dr. R who will be my radiation oncologist. I will meet with her before surgery to discuss our plan for radiation to my right breast and chest wall, and possibly my spine. Radiation will start about 4-6 weeks after surgery. As you can see, it's going to be a long road ahead. But what better motivation to forge ahead than receiving such terrific news, like I did today! I can't thank you enough for being there for me - for all of the texts, phone calls, emails, blog posts, and facebook messages I received in the last couple of days. It truly makes me feel better to know that I have so many people praying for me - you guys are the best! Keep the prayers coming because we still have a long way to go. But for now, I will bask in this great news. For the next five weeks, I am going to focus much of my attention on trying to regain my energy, slowly begin exercising again, and taking the absolute best care of myself in anticipation of surgery. And you know I will also be mixing in fun times like this Saturday at the U of M game (thanks Aunt Clare!), a friends wedding, taking my hubby to a great concert, many birthday parties, strutting my stuff in a charity fashion show, our fundraiser on September 25, trips to the cider mill...and much more! Thanks again everyone! And thank you God for answering our prayers! xoxo, Meghan In honor of the coming of my favorite season, here are some fall pics from a wonderful trip to the U.P a couple of years ago... Big birthday celebrations are not really his thing. He hates to be the center of attention and never seeks out the limelight. But on this one day of the year, my fabulous husband begrudgingly allows me to spoil him and give him some extra special attention, which he most definitely deserves. Mike would not be a happy camper if I went on and on about how much I adore him, how much he means to me, and what an impact he has had on my life over the last 12 years...see above sentence regarding his discomfort with extra attention. ;) And with my gift of gab, you all know what I really want to do is just that...write sentence after sentence after how incredible he really is. But the thing is, I don't even need to do that. Most of you that are following our journey, know Mike personally...and to know him, is truly to love him. Period. So, as one last birthday gift to my amazing husband, I will not gush about him - I will simply say that we had a wonderful time last Thursday celebrating his birthday. We had a very special and meaningful day together reminiscing about the past, dreaming of the future, and enjoying time with our family and friends. Happy birthday to my very best friend - can't wait to celebrate many more together! The time has now come to round up the troops in order to bombard the heavens with prayers and good vibes. A CT scan of my chest, abdomen, and pelvis is scheduled for first thing tomorrow morning. Then on Tuesday morning I have an MRI of my thoracic spine followed by a full body bone scan. This is the first time I will have these scans done since I was diagnosed back in March. I have been so busy lately that it doesn't seem like I have had too much time to worry about these tests. But, I am wondering if subconsciously, I am more stressed about it than I thought. For the past week or two, I have been waking up at least 4 times each night, and have had difficulty sleeping for more than 2 hour increments. I wake up in the morning feeling like a zombie, with a sore jaw on top of that from grinding and clinching my teeth. I am really hoping that it's just due to anxiety and it will resolve after these scans are completed. Repeating these tests is obviously scary, stressful, and overwhelming for a lot of reasons - one of which is because it brings me right back to the first few days and weeks of this entire ordeal. What a terrifying time that was for us. This time around I know what to expect, which definitely helps - but I don't think the fear and worry will ever go away. For the rest of my life I will be monitored by scans, tests and blood work and the truth is that as positive as I may be, I will always be terrified of what could happen. The reality is that things could always be worse, the scans could always show progression, and we could once again be faced with devastating news. I pray this is not the case, but I feel that preparing for the worst has helped me deal with whatever may come my way. Early on in this journey, Dr. F explained to us that because my cancer is driven by estrogen, the hormone therapy I start after chemo will actually be my best weapon against this disease. Although we all agreed to start with chemo to try to contain the spread of the disease systemically, it is actually the hormone therapy I will start next that we will expect the greatest results from. With that said, we are prepared that these scans may not show any big changes since chemo started. And that is okay! The key is that we don't want to see any spread of the disease. If I have remained stable, that is good news to us - and if there does show a decrease in the tumor size or spread, that is icing on the cake! I will finish (yes, I said FINISH!!!!) chemo this Thursday, September 1. I can't believe how fast these 15 rounds have flown by. I have some mixed emotions about wrapping up with chemo - it is my routine now, I know what to expect, I feel comfortable there, I know how I will feel afterwards, I know everyone and everyone knows me. But, I also know that it's time to move on to the next hurdle and get on with the show. We leave for Florida with Mom and Doug super early on Friday morning. Yay! Our wonderful friends, John and Paul have invited us to spend Labor Day weekend at their beautiful home in Fort Lauderdale. We are definitely excited for an "end of chemo celebration" which will include sunshine, sandy beaches, and visiting with lots of friends! Not only will we get to stay with John and Paul but we will see one of my mom's best friends, Sally - one of our biggest cheerleaders and supporters! Then later in the weekend, we are meeting up with Brin, Andy and Andrew again!!! We are meeting them in West Palm Beach, along with Brin's wonderful parents, and I am so happy we get to see them again so soon. I am really looking forward to a little getaway to mark the end of a huge chapter of this journey. Next week will bring the official start to the school year and Mike will be back at work full time. I know we are both a little nervous about it, but I am confident it will all work out just fine and I will be okay fending for myself at home. :) Mike is such an incredible teacher and he absolutely loves his job, so I am happy that he will be back in the classroom. I am so grateful to the Waterford Kettering administration and staff for being so amazing and allowing me to have my husband with me each and every day these past five months - I don't know what I would have done without him there with me and I am so appreciative to each of you that allowed that to be a reality for us. A week from Thursday (on September 8), we will go see Dr. F to find out the results of this weeks tests. That will be a major appointment where we will discuss the next part of our game plan and figure out where we go from here. I am definitely having surgery, but there are also a lot of other treatments we may begin right away in the form of oral medications. Later that afternoon, I will also go see Dr. B at Beaumont to discuss final surgery plans and hopefully set the date for my mastectomy. Wow, just typing all of that makes me feel exhausted - let alone going through it. Please keep me in your prayers this week - if you do already, maybe you could throw in a few extras. Please pray that the 4+ months of chemotherapy have stabilized this disease, that my healthy cells have continued to fight, and that my bones have remained strong and stable. Please pray that my incredible doctors and medical team continue to seek the most comprehensive and aggressive treatments available, that they are able to guide us along a healing path, and that they continue to push for more research and discovery for metastatic disease. Please pray that my family and I are able to ease our minds, calm our fears, and stay positive and hopeful throughout the many days of waiting for my test results. I will definitely update everyone next week after our appointments. Until then, I want to pass along a moving and inspirational short film to all of you. It was shared with me by an amazing woman I have met that is also battling metastatic breast cancer. It is a powerful message regarding living with metastatic disease and I plan on playing it over and over again when I need a little boost. Please click here to read a short interview with the film's creator, and be sure to watch the 15 minute movie at the bottom of the page when you have time. Have a great week and a happy Labor Day celebration. A special congratulations to my friend, Stacy! Sorry we are missing your big day - can't wait to see pictures. You will be a beautiful bride! xoxo, Meghan |
AuthorMy blog to keep you all Archives
December 2021
Categories
All
|